New National Lyme Disease Registry!
The Lyme Disease National Registry is a non-profit organization interested in raising awareness of the prevalence of Lyme disease in the United States.
By raising awareness of the Prevalence of Lyme disease in the United States, the LDNR seeks the following goals:
- To provide data analysis from the registry which will supersede the current data provided by the CDC.
- To have more physicians trained in the recognition of Lyme disease as a clinical diagnosis.
- To raise awareness of the IDSA of the existence of chronic Lyme disease.
- To bring IDSA and ILADS together to get rid of the current controversy over the Lyme disease diagnosis.
- To obtain funding for further research to treat and cure Lyme disease.
- To raise awareness in communities to non-physicians of the Lyme disease epidemic.
- To promote education to all physicians (PCP’s, Infectious disease doctors, psychiatrists, etc.) to recognize symptoms of Lyme disease so patients are not misdiagnosed.
About Gary:
My name is Gary Engelman, BSN, RN. I have been an RN for 16 years. I am a chronic Lyme disease sufferer as many of you are. I decided to create this site for the reasons below and again, to meet the goals outlined in the Mission Statement. My background is in ICU, Emergency Medicine, Coronary Care and hold a certificate in PICC certification for PICC insertion under ultrasound. I made it half way through an adult Nurse Practitioner school when my children were born and I could no longer afford the schooling. I continued to work as I had done all of my career. I was struck with chronic Lyme two years ago, but didn’t realize it was Lyme until late 2008. My symptoms are many and are in line with Lyme itself, Babesia, and Bartonella. I have a clinical diagnosis from a LLMD and I am doing alternative therapy to get well.
I’m sure at some point, the CDC and perhaps the IDSA will follow the reporting on this site and it is important to keep the site credible. For this reason, I do require any and all people who wish to be part of the registry to give basic information of themselves. The information is stored online in a database on my hosting site with GoDaddy, that is well protected. If I didn’t require email verification and personal information, I feel that this site could easily be discredited and would then destroy what I am trying to do for the Lyme community. As stated in the Registry Form, your information is confidential except for what is already being provided in the charts, graphs, etc. All email addresses, home addresses, and phone numbers are not and will not be distributed to anyone. There has been questions as to who was running this site and why I didn’t put my name out there to start with. The reason is simple. I didn’t want to fall under the same scrutiny that the LLMD’s and the like are already under. Like you, I am also trying to get well and am not looking for any more headaches than I already have. I strongly believe this site will have a strong impact on getting the recognition that we all deserve.
I launched the site prematurely to officially becoming and approved organization only so that I could begin collecting data. Please be sure the paperwork has been started and it is very time consuming, so I would ask that any and all donations be held off on at this time. Once the organization has been approved for non-profit status, funding by donations will be used as outlined in the mission statement.
The Lyme Disease National Registry was formed in order to accomplish the the goals outlined in the Mission Statement. While Dr.’s debate about the diagnosis of Lyme disease itself, many are needlessly suffering. It is my belief that the forthcoming data will reveal data showing that most people with chronic Lyme disease are receiving care from LLMD’s and the like, and not by MD’s affiliated with the IDSA. I ask that you help me spread the word on this site so that we can get the data that we all know is in line with what I am saying.
I want to disclose that I live on disability. I am not affiliated with any insurance company or other organization that has anything to do with Lyme disease or the like. I am making significant progress with my own treatment, but be sure that even once I am well, I will continue with this site and advocate on behalf of the Lyme community. When I reach this point, I will shift my career to a focus on Lyme disease. Just like breast cancer survivors become advocates for others, I will be a Lyme disease survivor and do the same. When I am well I plan to continue raising awareness by holding my own seminars, scheduling appointments with psychiatrists and other physicians, who misdiagnose patients that actually have Lyme disease, and instead, hand out diagnosis that fall secondary to Lyme disease.
If anyone is interested, I have a Lyme disease support group. You can visit this site here: http://lymechatnetwork.ning.com/.
This support group has alot of information on Lyme disease and alternative approaches to getting well. This site was also recently launched and has a dedicated chat room which is open 24 hours/day, and I do schedule chat session times for everyone to come in at a preset time to talk about Lyme and whatever is on your mind.
I have also researched and made videos on both anxiety and depression, which is originally what I thought I had. I have researched both of these conditions in great depth, including pharmaceuticals and how they work in the brain at the neurotransmitter level. If anyone is interested in watching these educational videos follow the links from the Registry site: http://ldnr.org/about.html
Now that my research has turned to Lyme, I have also began to make videos about Lyme disease. All of these videos can be found on the video link at my support site above, however some of them can be found on YouTube.
Some have asked why am I doing all this when I should be focusing on getting myself well. Let me answer this with a short story: I lost my brother who was just 39 years old to lung cancer in December of 2006. To make a long story short, there were reports dating back to 2001 showing this cancer, but he wasn’t told about it until 2005. Had he not been misdiagnosed, I believe he would be alive today, as the cancer would have been treatable at a stage 1 instead of a stage 4, which is what he had when he was finally told about his condition.
In my own case, I went into a deep depression when he passed away. I honestly believe, the Lyme was there all along, as I had some symptoms that started before my brother even became ill. I believe that when my brother passed away, my immune system became suppressed and the dormant Lyme disease was able to come out in full force to make me sick in the ways that many of you are. Many I have spoken to have also had a traumatic event occur just prior to their Lyme coming out, as mine did. With regards to my brother, I have seen these kind of mistakes made many a time in my career as a nurse. So not only was my brother misdiagnosed, but so was I. As an RN, I am use to helping people. And just because I am sick, doesn’t mean that I don’t want to continue to help others. It’s like any other profession, if you enjoy what you do, you will try and do it at all costs. I am passionate when it comes to helping others and I will leave it at that.
Let me finish by stating that I don’t proclaim to be an expert on Lyme disease, anxiety, or depression. With that said, I have done tons and tons of research on all of this. There are many unknowns out there, and I honestly don’t believe anyone is a true expert in any of this. If there were, than there would be a golden standard and we would all be well. So, if you visit my sites and watch my videos or read my blogs, please remember that anything and everything I say is just my own opinions based on the research I have done. Be well, stay strong, and we will win this battle.
Gary Engelman, BSN, RN
_____________________________________________________________________________
From Jenna – Please go to the Registry and be counted! Register at http://ldnr.org/index.html.
We can make a difference if we work together.
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March 22nd, 2009 at 2:40 pm
Jenna,
I’ve seen the lyme registry a couple of times, and for some reason I stop myself from registering. Maybe I’m cynical but a lot of my experience with non LLMD’s has been horrible. As soon as they see in my records I’m lyme positive they discount everything that comes out of my mouth. Am I the only one? A registry seems like a perfect way for the insurance/medical industry companies to black-list us. I’m all for trying to get rid of the ‘controversy’, but I’m wary about putting my name and information on a ‘list’.
I believe many doctors are instructed to ignore lyme. In the last year three lyme positive patients have gone to a local clinic and been summarily ignored by the MD’s and refused services…i.e. One particular patient went in with bronchitis and the doctor refused to treat her after he found out she had lyme.
I’m not kidding, this is no joke, I’ve had doctors drop me as a patient. No reason, no explanation.
I already feel like many lyme patients are being black-listed.
Is this registry going to make it easier?
March 23rd, 2009 at 6:31 am
I never heard about this disease and I am very sorry for this man. Tell me what the symptoms of this disease?
March 25th, 2009 at 4:16 pm
Dorothy-
Lyme disease can and does mimic many different diseases from rheumatoid arthritis to MS. The symptoms are all listed at our website http://www.LymeDiseaseResource.com. Thanks for your comment!
Jenna
March 26th, 2009 at 3:25 pm
Sorry it has taken me so long to get back to you – I have had a string of rotten days…
I am torn by the issue but lean on the side of needing a registry. My reason has to do with collecting numbers that the CDC doesn’t have. Some people will value their privacy over the education issue, and if we hope to sway public policy I think we will need more than anecdotal stories. This particular registry is run by a controversial guy, but that shouldn’t stop us from joining together. After all, it is OUR cause – all who are sick whether or not we agree on specifics, treatment or protocols, we need to get a grasp on the number of people in the US suffering with Lyme.
I am horrified by your experience of being blacklisted, but I see our movement as having the possibility of being a wave of facts and figures that crashes over the close-minded jerks who took an oath to help people and then slam the door shut in your face. I don’t know how they sleep at night! But I know there are also many, many sincere doctors who want to know the truth and will support our cause when Viral Genetics, Dr. MacDonald, Dr. Fallon, Dr. Mario and others are finally taken seriously – which is beginning to happen. Lets keep faith and do everything we can to further our cause.
Does that make sense to you?
June 1st, 2009 at 8:54 am
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June 8th, 2009 at 1:20 pm
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August 20th, 2009 at 6:20 pm
Thanks your good sharing. I appreciated you all.
August 30th, 2009 at 3:10 pm
I never ever post but this time I will,Thanks alot for the great blog.
November 5th, 2009 at 12:09 pm
Hi Gary Engleman,
I came across two pictures that you had posted on the internet. Did you ever find out what was making you sick? You said that you took the pictures to a state lab and that you had seen I.D. doctors but they would not give you any medicine until it was figured out what you have. One of the pictures looked like two lines of barrel shaped items, and the other picture looked like flagella. The reason I’m asking these questions, is I have the exact same thing (barrel shaped items) sitting in alcohol. Right now, I’m trying to also figure out what they are? I think it is possible that it is capillaria hepatica. By chance did you have an enlarged liver? Are the barrel shaped items approximately 3mm to 4mm or slightly longer and do they look like they sit inside something that is see-through? Let me know.
November 10th, 2009 at 8:24 pm
I was first diagnosed with Lyme in Florida after a visit up north in 1990. I have been bitten with proof at least 4-7 more times with c0-infections. The last bite I got this April of 2009, I went straight to clinic with it still attached/with nice red ring around, and had them remove it themselves! It hadnt been on me for more than 6hrs and was the female, not the male Ixodes. This doc, whom was also an ex military infectious disease medic, whom has seen me for over 10 yrs, never treated me correctly, or will still say I have Lyme! It cannot be disproved this time, and it happened at the same time I had to go to disability court, and still I did not recieved disability for that, they gave it to me, so to say, for a somatization disorder/all in my head, and syncope/falling down, loss of muscle control, arthritis, cannot work, etc…bull. There is something extremely wrong and fishy about all of it. When I first called to florida to get those first records, they were there, now they are not. I have other records missing too now. My new LLMD, even he says he doesnt know how I’ve stayed alive so far, I just tell him for my children. I have had many supposed misdiagnoses. I know I’m on my way out now, my heart slows down and stops, dyslexia worse, etc, yet I hang in there, and I hope somewhere besides a plant in s.e. asia, there will be a cure soon……god bless us all….I have seen an Angel, and know that they/noncaring docs will be judged according to their deeds…..all I can say is-get’em satan, and eat them alive as they have let this disease eat us, I know its vengeful thinking, yet the pain is talking, not I…..
November 11th, 2009 at 9:58 am
Marre – Most of us have had disability denied, but don’t give up! If you have had Lyme since 1990, I am willing to bet you have significant clinical depression. Try to find a really good clinical therapist or psychiatrist and approach your disability from that angle. I hate to say this, because in my case I actually did get disability after my appeal with Lyme as my condition, however, my clinical therapist said that he deals with SSD frequently and that if I ever had a problem again, that he could help me. Evidently, the government is more familiar with depression causing disability.
Either way, I recommend that you keep trying. Call your US Senator to help facilitate your case, and finally, I would advise that you approach the process in as calm a manner as possible. Lyme rage is a very real part of what we struggle with, and I know you can’t control when these symptoms occur, but perhaps a friend or family member can help advocate for you. Hang in there and remember – You are not alone!
March 29th, 2010 at 3:50 pm
Where is this registry? The link does not work!
March 30th, 2010 at 7:10 am
Sorry about that!
Go to for the National Lyme Disease Registry
Sign up for free at MD Junction .com and then click the link above to sign uo for the registry.
Blessings!
Jenna
June 14th, 2010 at 12:04 pm
I have been bitten by ticks in the past and in my childhood (now 29) and thought nothing of it. Upon finding this I remembered that I had a tick attached to my skin about a month ago or so. About 5 ears ago I was diagnosed with psoriasis and dermatitis. I just recently started experiencing severe pains in my joints (above the everyday pains I usually have) last week and was forced to look for a different job. I saw my doctor last week and it sounds like they are trying to tell me its pinched nerves and a vitamin d deficiency.
I am writing to ask if a lyme disease test can be performed by my regular doctor and is that the best way to go about finding out if I have Lyme or not. I do not have insurance and would like the least expensive route to finding this out.
Thank you in advance for your help and support.
Josh Lentz
Grand Rapids, Michigan
616-890-4698
June 22nd, 2010 at 2:27 pm
Hi Josh -
There is no definitive test for Lyme disease which is one of the reasons for all the craziness in the Lyme debate. More sent privately.
Blessings,
Jenna
December 18th, 2010 at 12:05 am
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September 24th, 2011 at 4:33 pm
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